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Missed and Misdiagnosis of ASD in Women


Swetha Alachi

"Autism Spectrum Disorder (ASD) is a pervasive developmental disorder characterised by impairments in social and communicative abilities, along with the presence of ritualistic and/or repetitive behaviours" (American Psychiatric Association, 2013).  It is seen that the most widely reported male-female ratio for autism occurrence is 4-5:1 (Fombonne et al., 2011). When comparing the gender wise average age of diagnosis, we observe a massive gap in the percentages. While 50% of males on the spectrum are diagnosed before age 11, only 20% of females with autism are diagnosed before this age (“The Autism Dilemma for Women Diagnosis”, 2018). From these statistics arise the question of why women on the spectrum are more likely to be diagnosed much later in life unlike their male counterparts. The following theories and empirical research will attempt to question and elucidate whether autism is less prevalent in women, or if there are gender differences in the symptomatology of ASD.

One explanation for this misdiagnosis or late diagnosis in women could be due to the male centric display of ASD by which it it diagnosed, that may not concur with the disorder’s presentation in women (Gould & Ashton-Smith, 2011). One of the major diagnostic criterion is restricted interests. A consistent difference seen across the sexes is the lower level of restricted interest in girls when compared to boys. Further empirical evidence proposes that girls present different types of restricted interests, and as the diagnostic criteria and majority research done are more male-centric, this makes it difficult to identify them as atypical (Rutter et al., 2003).

Another hypothesis as to why ASD is more difficult to diagnose in women is due to the way they display social behaviour, known as female autism phenotype. Studies show that they exhibit better expressive behaviours, such as mutual conversation, sharing, imagination and integrating verbal and nonverbal behaviours. They are also more likely to have different exhibition of friendship problems than males, ie, being overlooked rather than rejected by peers and better initiation of conversation but difficulty maintaining it (Hiller et al.,2014). Studies also report more frequent cooccurring internalising symptoms in females and more externalising symptoms, such as hyperactivity and conduct issues, in males. This could be one reason the occurrence of anxiety and depressive disorders in ASD women are higher than that of men (Wijnhoven et al., 2018). 

One way in which women with ASD tend to blend into the neurotypical public is through the phenomenon of masking, or camouflaging. This strategy may include hiding behaviours linked to their disorder by using techniques or acting to appear socially competent and cover up their social hardships (Attwood 2007; Gould and Ashton-Smith2011; Kopp and Gillberg 2011; Lai et al. 2011; Wing 1981). It is suggested that girls with ASD tend to mimic socially successful parties in attempt to be socially successful as well. This is a result of the strong motivation to ‘systemise’ social behaviour, which is seen lesser in males (Attwood 2006). Hence, using this method of camouflage in order to disguise their social challenges makes it harder to recognise such challenges and provide them with intervention (Gould, 2017).

Apart from social behaviour, differences in cognition in young members of the spectrum could also be a reason for the difficulty in diagnosing females. Studies show that female toddlers with autism achieve better visual reception, higher score on the Wechsler Intelligence Scale for Children (WISC) Processing Speed index, Coding, and Symbol Search (Carter et al., 2007) , and are better at retrieving autobiographical specific memories and attention to detail (Lai et al., 2012). However, women are seen to perform wise in block design tasks (Bölte et al., 2011), language and motor development, and response inhibition. These differences in executive functioning between the genders could be another reason diagnosis is difficult.

When armed with their social-imitation, masking techniques and difference in symptoms in a predominantly male disorder like Autism spectrum disorder, their autism becomes more less noticeable. This, when present in a society that has certain gender norms, such as shyness and naivety for female behaviour, makes it even harder for ASD symptoms in young women to be spotted. Therefore, it is important to encourage further research and understanding both mean and women with ASD. Perhaps by working towards a more inclusive range of behaviour and diagnostic features, we can increase the successful diagnoses of women with ASD.


Citations:

  1. Fombonne E., Quirke S., Hagen A. Epidemiology of pervasive developmental disorders. In: Amaral D.G., Dawson G., Geschwind D.H., editors. Autism Spectrum Disorders. Oxford University Press; New York: 2011. pp. 90–111.)
  2. The Autism Dilemma for Women Diagnosis - researchautism.org. (n.d.). Retrieved from https://researchautism.org/the-autism-dilemma-for-women-diagnosis/.
  3. Gould J., Ashton-Smith J. Missed diagnosis or misdiagnosis: girls and women on the autism spectrum. Good Autism Practice. 2011;12:34–41 
  4. Hiller R.M., Young R.L., Weber N. Sex Differences in autism spectrum disorder based on DSM-5 criteria: evidence from clinician and teacher reporting. J Abnorm Child Psychol. 2014;42:1381–1393.
  5. Attwood T. Jessica Kingsley Publishers; London: 2007. The complete guide to Asperger's syndrome.
  6.  Kopp S., Gillberg C. The Autism Spectrum Screening Questionnaire (ASSQ)–Revised Extended Version (ASSQ-REV): an instrument for better capturing the autism phenotype in girls? A preliminary study involving 191 clinical cases and community controls. Res Dev Disabil. 2011;32:2875–2888.
  7. Lai M.C., Lombardo M.V., Ruigrok A.N. Cognition in males and females with autism: similarities and differences. PLoS One. 2012;7:e47198
  8. Wing L. Sex ratios in early childhood autism and related conditions. Psychiatry Res. 1981;5:129–137.
  9. Gould, Judith. “Towards Understanding the under-Recognition of Girls and Women on the Autism Spectrum.” Autism, vol. 21, no. 6, 2017, pp. 703–705., doi 10.1177/1362361317706174.)
  10. Attwood T. Asperger’s and girls. Arlington, TX: Future Horizons, Inc; 2006
  11. Bargiela, Sarah, et al. “The Experiences of Late-Diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype.” Journal of Autism and Developmental Disorders, vol. 46, no. 10, 2016, pp. 3281–3294., doi:10.1007/s10803-016-2872-8.
  12. Hiller R.M., Young R.L., Weber N. Sex Differences in autism spectrum disorder based on DSM-5 criteria: evidence from clinician and teacher reporting. J Abnorm Child Psychol. 2014;42:1381–1393.
  13. Head A.M., McGillivray J.A., Stokes M.A. Gender differences in emotionality and sociability in children with autism spectrum disorders. Mol Autism. 2014;5:19
  14. Dean M., Kasari C., Shih W. The peer relationships of girls with ASD at school: comparison to boys and girls with and without ASD. J Child Psychol Psychiatry. 2014;55:1218–1225. 
  15. Wijnhoven, L. A. M. W., Creemers, D. H. M., Vermulst, A. A., & Granic, I. (2018). Prevalence and Risk Factors of Anxiety in a Clinical Dutch Sample of Children with an Autism Spectrum Disorder. Frontiers in Psychiatry, 9. doi: 10.3389/fpsyt.2018.00050
  16. Attwood T. Asperger’s and girls. Arlington, TX: Future Horizons, Inc; 2006
  17. Carter A.S., Black D.O., Tewani S., Connolly C.E., Kadlec M.B., Tager-Flusberg H. Sex differences in toddlers with autism spectrum disorders. J Autism Dev Disord. 2007;37:86–97. 
  18. Bölte S., Duketis E., Poustka F., Holtmann M. Sex differences in cognitive domains and their clinical correlates in higher-functioning autism spectrum disorders. Autism. 2011;15:497–511.



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